A forum for family, friends and carers of pancreatic cancer patients

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Ofmenandangels
Posts: 5
Joined: Thu Jul 03, 2014 9:31 pm

We're newbies!

Postby Ofmenandangels » Sat Jul 05, 2014 2:09 am

Hello everyone,
Im new here and thought that this would never happen to me. My beautiful, intelligent, clever brother who can always make me laugh and has always been sensible and cautious has brought me to you. I have read some of your stories and have found them awe-inspiring and beyond bravery, some heartbreakingly desperate and in reading some accounts I have had to look away. My brother is 45 years old with a wife and two lovely sons of 6 and 8 and has been suffering with dyspepsia, discomfort and nausea for about 9 months and been fobbed off by the GP as is usual it seems. Last week my mother who lives locally to him, and has been phoning me in worry because of his weight loss for some weeks, took him to the local hospital, he went willingly as he had been suffering at night with significant pain for a time. The GP had found abnormal liver and kidney results in blood tests but had said that my brother was not an urgent case for an ultrasound and my brother had therefore been waiting endlessly for an appointment to evaluate these symptoms.
My mother took him to the local hospital in desperation last week and they performed a CT and found that my brothers liver is scattered with focal centrally narcotic lesions up to 35 mm. This week at the GP we were also told that the scans showed thickening of the pancreatic tail, which is slightly hypodense and measuring 36mm.
We Are, as you all can understand.... lost.
my brother lives in cheshire but is willing to travel anywhere if there is any hope of anything at all.
He has now been told that he is terminally ill but we are willing to explore any way or any avenue if there is anything that can help him to extend his life and spend more time with his young boys.
I am desperate for some hope , or something, anything.
We all seem to be on this terrible journey together and I aam desperate for any info that might help us keep my brother alive.
Please respond if you can help us.

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: We're newbies!

Postby nikkis » Sat Jul 05, 2014 7:53 am

Hi there, and welcome, so sorry to hear about your brother, this disease is a complete nightmare for everyone involved, isn't it? I am sorry but I haven't go any specific advise to give you but has he been given an appointment to see an oncologist to discuss any treatment options? As you have probably gathered from other posts there are chemotherapy regimes that can improve symptoms and prolong life, but only an oncologist can tell your brother what is suitable for him.It is probably also worth speaking to the nurses from this site during the week, who can give you lots of help and information.

Take care,
Nikki

Ofmenandangels
Posts: 5
Joined: Thu Jul 03, 2014 9:31 pm

Re: We're newbies!

Postby Ofmenandangels » Sun Jul 06, 2014 11:24 pm

Hi Nikki,
I have tried to phone the number given but can never get through, it rings for a while and then goes dead.
My brother has been going to his GP for 2 years with pain and dyspepsia so I don't understand how it has come to this.
I am shocked that I can lose my big strong brother , I and my sister live a considerable distance from him. If he was nearer maybethings could have been different as we might have been able to go with him to the doctor earlier and have flagged things up quicker.
I'm lost and struggling to make any sense of this

Ofmenandangels
Posts: 5
Joined: Thu Jul 03, 2014 9:31 pm

Re: We're newbies!

Postby Ofmenandangels » Sun Jul 06, 2014 11:37 pm

The oncologist hasn't happened, he
hasn't even had an MRI yet, that's negligence on the nhs for you,!

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: We're newbies!

Postby nikkis » Mon Jul 07, 2014 7:16 am

Hi there,
The support line is open during office hours, so try them again then.
This disease is so devastating, I only wish there was something I could say that would help,
Nikki

Fifi

Re: We're newbies!

Postby Fifi » Mon Jul 07, 2014 8:26 pm

Very very sorry to hear about your brother. I wish I did have the answers for, I would use them myself if I did.
What I will say, from experience, is chase appointments. When they say 2 weeks or 3 weeks or whatever, keep on at them, get the appointment earlier. When he goes, have someone be with him. Take a little book. Prepare questions beforehand and get them answered and write it all down. Ask away.
Time isn't something we have with this, chase everything up.
You might not think you are strong enough, I know I did, but you can do it. I think you will be surprised at how much you will fight your brothers corner.

Leila xx

deb3927
Posts: 5
Joined: Tue Jul 15, 2014 11:22 pm

Re: We're newbies!

Postby deb3927 » Wed Jul 16, 2014 10:28 pm

So sorry to hear about your brother. It sounds like his cancer started in the tail of the pancreas same as my mums, I think because this doesn't cause jaundice it can go unnoticed. Hers was diagnosed with a routine blood test although by that time she had also lost a stone in weight. It took some months in between that blood test and her seeing an oncologist, there seemed to be a couple of weeks between each test and each result and each appointment! It is so frustrating! I just kept advising her to call the hospital to chase up results and appointments etc.
She went from CT scan to biopsy to oncologist so there may be no need for an MRI too.
Hope things speed up for your brother soon!

Deb